Kate Swaffer: Creating life with words: Inspiration, love and truth

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Who’d be an advocate…

Advocating has been quite a bumpy road the last few days, and many times I have thought, “just give up”, or “it is not worth the personal attacks”. One email friend from Western Australia who had heard from her colleagues about an issue I had last week sent an email of support, with this image at the bottom. It was exactly what I needed, so thank you GM!

But stop me they won’t, as if the small number of people around the world, including me, don’t speak up for the most basic of human rights for people with dementia, then it seems, no-one will. Many talk the talk, but then the organisations providing the care don’t walk the talk of authentic person-centred care. Let’s hope Consumer Directed Care also helps to force at least a few issues.

30 thoughts on “Who’d be an advocate…”

So many lovely comments from your friends Kate, not much for me to add except loads of hugs!! I cannot possibly fathom why anyone would wish to personally attack you, but there are so many more people who love and cherish you. Take care xx

Hi Kate, Its was good to meet you last week at the conference. I work as a case Manager and do not hold hope that the Consumer Directed approach is going to help your cause too much, Although we are told that consumers will have more choice, the reality tells me that the choices will still have to fit with confines of what organisations can provide, for instance you will not be able to choose Mrs. Johns down the road to take you shopping if she does not have an agreement with an organisation. The fees that people will have to pay now have to be assessed by centrelink and are means tested. I fear many people out there will choose not to have the support they may need if they have to provide their income for a possible 3 hours of care in the home . When I mentioned to a collegue the other day that people will peoples want to have consistancy with staff and will be able to demand it through CDC I was told that they will still have to flexible as services are limited. I fear we are moving to a user pay model rather than a model that actually provides a system that is trully based on a clients needs.
You have given me much food for thought with regard the lack of profile for the person who has the diagnosis, I fear that there is still a journey there but I encourage you with you advocacy because without people like yourself the message will never get through. I have been in the industry for 30 + years and I have not seen a lot of change with approaches to Dementia, there is a lot of talk but not a lot of action especially with training of staff on the ground. I would be happy to assist in anyway that you thought would be practical as I feel very strongly about this issue. I have worked with many people living with Dementia who are still very able to live and work in the communtiy but as you said in your presentation are immediately disregard.

Thanks for joining the conversation here Julie, and although I have to apologise for I cannot actually remember who you are – there were around 1000 people, so I’ll use that as my excuse! Sadly, in 30 years it has not got much better, worse in some ways as we now lock the elderly and people with dementia up in aged care facilities and “Secure memory units” as if they are in gaol, with NO regardsfor their human rights. We would NEVER lock people up with mental illness,without following some very stringent guidelines, but do it without consdering the rights of those we lock up. In fact, I think people witrh dementia and the elderly received more person centred care 30+ years ago, as the vocation has gone out of nursing completely for many. Thank you for now speaking up for the rights of people with dementia to speak for themselves, and to be included.

PS. I got so carried away on my soap box that I totally forgot to write what I meant to in the first place which was to tell you what an inspiration you are, and never let the ignorant get you down. As a very good friend of mine always used to say to me, “Be an eagle – rise above it and sh*t on all the pigeons” – you will always soar. You may have days when it just seems so very hard, but you are strong and your ethic, your integrity, your courage and your passion will prevail. So many of us are listening to you and that my friend means we respect everything that makes you who you are. That also means that you have people who back you all the way and are willing to advocate for YOU!!!!

You have some great comments there Kate, so there’s not much left to say except. What B*******! And please don’t give up – you are doing so much good, more than you or I will probably ever know. Keep going my virtual friend. Onwards and upwards. xxx

I was recently asked to chair a panel of authors who write/speak about dementia. I suggested we also have a person living with dementia on the panel. It proved impossible to find someone even through Alzheimer Scotland. I wonder how this can be addressed?

Have you en in touch with the members of the Scottish Dementia Working Group – they are ALL people living with dementia – http://www.sdwg.org.uk/ – sadly, more often than not the Associations don’t look very hard to find us! Email me if you wish as I have email contact with some, or even try Agnes on twitter @agnes_houston

Love you too Tony… and no, I have NO idea why people are so damned threatened by peoople with dementia who dare to speak up if they are unhappy with something… it makes one really wonder about humanity sometimes too. No doubt people like Dr King and Ghandi knew this far more than I will even begin to understand it.

Hello, the tipping comes before folks like us decide to give up, it comes from many/any of our friends who decide not to decide, at least just yet. It comes when we take a vacation/a pause/a diversion from open and direct advocacy while the dark forces never take day off, never cancel stigma producing public service ads, never stop pressing for money to spend without considering how it has been, is and will be spent based on reason evidence, and experience. It comes from our own well intended who caution us to slow down lest we offend the so easily offendable crusaders who continually trod over our rights and presence.

The tipping point always belongs to the well financed, the well organized, the well connected. They start with the tipping point firmly cement in their back yards. Covered by mounds of power/authority/focus group statistics/data/champions/folks with more time and money than they can ever spend in two life times.

We start with our own experiences. We grow by sharing them with others and they with us. We hesitantly stand up, they put on their expensive suits, cash their undeserved salary check,s walk past us waiting by the side of the road or in front of their offices on their ways to meet each other and honor each other, and organize with each other.

Although some believe right is on their side, and if it isn’t at least the their ends justify their means. They become irritated with us because we act like we don’t like them, we don’t like what they are doing, when afterall their motives are so pure. We wonder aloud is this the right way to do the right thing. They never bother about right ways, for they are blinded by their own mixed motivations. They are for our best interests, and if means ignoring us for their own good for a while so be it. If it means promoting stigmatizing fund raising campaigns for a while in order to achieve their goals fora while, so be it.

We see a world living in fifty shades of grey, they see a world living in black or white. We take the time to err on the side of the living, the side of those living most directly with the problem, they err on the side of the cost and impact on governments, on the possible impact of those not now living with the disabilities of dementia and their off springs. They want the best tomorrow, we want the today we each and all deserve.today.

I totally agree with you here Kate – there are way too many people who ‘talk the talk’ yet in reality it is all just lip service and does not make a difference at all.

Many people are not willing to put in the blood, sweat and tears required to advocate for those in need, whether it is because they actually don’t really know how to create change, they just like the sound of their own voices, (haha) or they lack the resources and support that is required to take that leap of faith.

Many people fear change, and care too much about how they may be perceived if they speak up, but if what you are seeing is wrong, then it is your responsibility to stand up and say so.

However, when there is an area of need, and advocacy is required, those with the courage of their convictions CAN make change happen.

Having been one little but forceful ‘voice’ for people living with dementia, it has been my life’s work to create a different mind set to all those people out there who just don’t get it.

I will continue to always advocate for people living with dementia because if I do not, then I am basically condoning the appalling lack of care I have personally observed throughout my career in the medical industry.

I have been able to share my philosophies with a much greater number of people than I ever thought possible, by supporting what I believe through evidence based research, putting myself out there, and trying to inspire others to believe in my dream.

My quote, which I had tattooed on my back as a young nurse is a philosophy that I have lived my whole life by.
“Be the change you want to see in the world” – Ghandi.

Do not ever give up my friend – ‘Risk more than others think is safe, care more than others think is wise, dream more than others think is practical, expect more than others think is practical..’

If you believe, magic truly can happen. I have seen it for myself. I just wish there were MORE of us who understand how crucial this is.